By LEIGH C. MERRIFIELD
News & Journal Editor
“Being Mortal” is a public awareness campaign that encourages people to give thought to advance care planning. This campaign was a major focus this month at both United Hospital Center in Bridgeport as well as St. Joseph’s Hospital in Buckhannon. It not only encourages people to think about their end-of-life wishes, but to communicate those thoughts to their loved ones and their physicians.
The Hospice Foundation of America (HFA) was selected by the John and Wanna Harman Foundation to sponsor and coordinate this effort, and in early October the local public and clinicians were invited to meet together for a free screening and discussion of PBS’s Frontline film titled Being Mortal. This documentary, based on the best-selling book (by the same name) authored by respected Boston surgeon Dr. Atul Gawande, shares stories about experiences at the end of life from patients and well as members of the doctor’s own family.
“St. Joseph’s Hospital and UHC are honored to have received the funding for this project,” said Linda Carte, RN, MSN, AOCN, vice president of oncology and post-acute care at UHC. “Viewing something such as Being Mortal is especially important when you consider that 79% of Americans say they would prefer to die at home. However, nearly 70% die in hospitals and institutions. Ninety percent of Americans know they should have conversations about end-of-life care, yet only 30% have done so.”
Dr. Paul Davis, medical director of People’s Hospice, a department of UHC, stated, “Many people choose not to think about and/or talk about their end-of-life wishes because it they consider it an unpleasant topic. They know it is something they should do, but they don’t do it. Unfortunately, there is no alternative to aging and dying, but having made some of these decisions in advance helps eliminate these decisions being made during a time that is surrounded by emotionalism … which only makes these discussions more difficult.”
Carte added, “On a personal note, it is heartbreaking to watch families worry about whether they have made the right decisions or not at end of life when these subjects have been avoided. That is why it is important to have these conversations early. It is really a ‘gift’ to think about this early; it removes these types of worries that accompany end of life from family members. They can focus on loving and caring for their loved ones rather than worrying about making the wrong decision regarding a patient’s wishes.”
Discussions about death and dying are never at the top of conversation lists! However, it is a part of everyone’s family life. Postponing these discussions until serious health challenges are present only makes the conversations more difficult.
“The time to consider last wishes is before someone is ill … before the situation is emotional,” Dr. Davis continued. “When the time comes, would a patient want a feeding tube? Would they want continuance of chemo? Would they or would they not want to be placed on a ventilator? These are the kinds of questions that need to be discussed. When family members have knowledge of these wishes, then they can focus on simply being supportive if the situation arises – absent of the questions about doing the right thing. If these conversations are avoided, sometimes the patient is not able to tell them what they want, so family members are not prepared and suffer even more because they don’t know what their loved one would want.”
It is also important to remember that advance directives are not set in stone, Dr. Davis clarified. “These types of things can be discussed without documents,” he noted. “OR you can also have a document that can be notarized to make it legally binding.”
“One significant consideration,” Carte stated, “is that if, for example, someone is traveling and something happens, a legal directive would be on file so that information could be accessed.”
Because so many people say they wish to remain at home at end of life, it is important to at least have this discussion with your family members.
Dr. Davis concluded, “Hospice is a wonderful option. Because we see so much of this, we see the value of it. Opting for hospice care in a terminal case does not make us medical decision makers. It simply allows a patient to experience the comfort and care at home so that he or she can be with family.”
Carte agreed, “This, too, is something to be reflected upon and discussed. So many people say they wish they had known of hospice earlier because it is such a wonderful supportive aid administered in the home. That is why we encourage people to learn more and have these sensitive conversations in advance of the need arising. Discuss it before you face it.”
When “curing” is not an option, then concentrate on simply “caring” … KNOWING that you are fulfilling your loved one’s wishes.
If you missed the documentary screenings held at UHC and St. Joseph’s but would like to learn more about advance care planning, UHC has booklets available with more information. Contact People’s Hospice, a department of United Hospital Center, at 304-624-2424 to inquire. You can also watch the documentary online by visiting www.pbs.org/wgbh/frontline/film/being-mortal.
When “curing” is not an option, then the focus turns to “caring”.